Support and information after multiple miscarriages thread

skintchick

I've decided to edit this post to add a little 'welcome' and make it clearer what this thread is for. My original post below makes it sound like you have to tick certain boxes to be on here, but it's not meant to be like that.

This is a welcoming and supportive thread for those who have had more than one miscarriage. Technically, the medical profession classes multiple miscarriages as three in a row, but we don't adhere to that here.

Having more than one miscarriage feels very different to having one, and once you are medically into multiples then it brings with it the possibility of investigations, tests and other things for which you might want support.

Personally, I've had five and have now been diagnosed with a genetic blood clotting disorder.

How ever many babies you have lost, and whatever you are thinking about the future, you are welcome here. Please post for support and love, and help others too.

Skinty xxx


This was my original opening post:



I know we have numerous pregnancy and TTC threads on here already, but I feel there is no thread that caters for those of us who have have had a number of miscarriages, and for whom the way forward is not quite as simple as trying again.

I thought maybe it would be good to have a support as we work through the emotions and practical issues that multiple miscarriages bring.

I have now had five miscarriages - one before I had my daughter and four since - so I now officially qualify as having had recurrent miscarriages, which is three in a row, and am about to start having tests.

My appointment for St Mary's in Paddington, where Prof Lesley Regan's recurrent miscarriage clinic (RMC) is, came through today for July 31.

I thought this thread could be a place where those of us having tests after miscarriages, or additional help with TTC/fertility after miscarriage, could chat and share knowledge.

It is moneysaving because if you have these tests privately it costs a LOT of money. I am lucky to be going to St Mary's, as they do more tests than some other clinics, and I am getting it all on the NHS. I have a friend who is having to pay and it's costing thousands.

Anyway, this is long and rambling and I'm hoping that the mods will let us have this thread and that it will be useful to people.

cleofish

hi skintchick, i think this is a really good idea for the thread, as like you said its not just about trying again, there are more factors that come into play.

I am so sorry to hear of your recent lost as i saw your messages on the miscarriage thread. I hope that you are able to get some answers and you dont have to wait too much longer for your next little one.

afm, Ive just suffered my third miscarriage, in may this year, the last 2 happened at 11 weeks right before the 12 week scan where we were hoping everything was going to work out and my first miscarriage ended up being a molar pregnancy that developed into a tumour which i needed chemo to treat. So in all with pregnancys, getting over treatments, ttc and now it has taken 4 years and still we have nothing to show for it. We dont have any children either .
I have been referred for the recurrent clinic, but im still waiting for the appointment letter, we have been told possible mid august but they are unsure with the waiting list.

i think it would be really good to have a supportive thread where people can ask for advice from others that have been through the process before or are currently in it.

We were referred from our EPU centre, the woman did say you dont have to wait and you can start trying again and possible use aspirin as that sometimes helps, but when we asked what if we were pregnant by the time we got to see the recurrent clinic would they still carry out any tests we were told no.
So we have decided not to try until we have had the tests and results back, i just hate the thought of ttc and getting pregnant and getting all the way to 11 weeks and it happening again.

Did they tell you anything ahead of your appointment skintchick? ive heard there are certain blood tests carried out for clotting etc but do we need to prepare any sort of family history medical wise before hand?

sorry for going on but big thumbs up for the thread.:T

skintchick

Gosh Cleofish, that is a very long wait for a referral! Where are you being referred to? Are you anywhere near London as St Mary's is the world centre of excellence I believe, and my appointment was within three weeks of my referral.

Yes, it is true that if you are pregnant then the RMCs cannot do the tests that they need to, as they need your baseline hormone levels, and they also cannot help you with that pregnancy if they don;t know why you are having miscarriages. It is very hard to wait though, and it must be especially hard for you with four years of trying with no baby.

I did try taking the mini aspirin dose this last pregnancy, and while I'm sure for some women that it is the answer, it wasn't for us

So we have decided not to try until we have had the tests and results back, i just hate the thought of ttc and getting pregnant and getting all the way to 11 weeks and it happening again.

Yes, that is how we feel. I was OK after four, but now having had five I just can;t bear it. I need to know what's wrong and what we can do. I just cannot get pregnant again otherwise.

Did they tell you anything ahead of your appointment skintchick? ive heard there are certain blood tests carried out for clotting etc but do we need to prepare any sort of family history medical wise before hand?

They hospital haven't said anything and I haven't yet had my appointment pack, but my friend is also under St Mary's and has shown me what she has had to do. They need all your family history of miscarriages and blood clotting disorders, your full pregnancy and miscarriage/termination/stillbirth history and some other medical stufff. It's stuff that you probably know.

When I get my pack I'll tell you what is in it.

AFM, I am very down right now. I'm struggling with grieving and I'm finding it very hard to talk to God right now as I am so angry with Him for taking my babies. I know that's not the attitude but I am struggling. It's not a crisis of faith, I'm just not really talking to Him right now!

I think OH is the same - he has really withdrawn from me which is hard. With the other ones we leant on each other but this time we've just pulled apart. Thanks goodness we have DD to distract us.

Has anyone reading this been through this and come out the other side? Would love to hear from people who've had the investigations and now have a baby.

Molly41

So sorry for your losses.
Im a retired midwife and came across a lady in a similar position with one DD and then several miscarriages and an ectopic. It turned out she had very low levels of thyroxine and has been successful since it was treated. It seemed to have been overlooked and they think she had even had it before her first babe. It was very sad for her to undertake the booking but to lose the baby fairly late about 11/12 weeks. I saw her through most of her forever pregnancy but was then taken ill (and sadly never to return) but I do know it had a happy outcome.

skintchick

THanks for that Molly. I'll look into thyroxine. I'm not sure I've read about it yet.

GPark

Hi skintchick,I'm so sorry for your losses, I know how hard it is as I have been through this, and am lucky enough to have a beautiful little boy now. I had ds1 with no problems whatsoever, so was expecting it to be easy when we decided to have a second child.

Between ds1 and ds2, I had 3 miscarriages in a row, 2 naturally at 8 weeks, and a missed miscarriage at 12 weeks. The mmc was the worst experience of my life After having 2 miscarriages, when I found out I was pregnant again I begged for an early scan, but was refused as 2 losses are considered "normal". When I got past 8 weeks without bleeding we really thought things would be ok, then we got to the 12 week scan and discovered that the baby had no heartbeat, and no obvious reason why, physically the baby looked perfect, but there was simply no heartbeat.

After my scan, I was taken to see a dr, and thats where I was "lucky" that I was taken to a consultant, who talked over my options, and I decided on an ERPC as I was scared that something from my previous pregnancys or the birth of ds may have been causing my losses. While I was with the dr, I asked about trying again, and was told it best to wait at least 3 months. I also asked if they could find out why the miscarriages were happening.

I was told that 3 in a row meant an automatic referral to the recurrent miscarriage clinic where they would run blood tests to start, and then if they found nothing further tests would be done. I was told it could take several months for the appointment to come through, so the consultant gave me the form for the blood tests and told me to wait 3 months after the ERPC to give my hormones chance to settle then take the form to the gp for the tests to be done, that way when my appointment came through for the hospital they would already have the results.

So that is what I did, I had my EPRC on 15th October, blood tests were done in January. At the begininng of February I received my appointment for March, so rang to check they would have my results. I was told since the blood tests had been done it was safe for me to ttc if I wished. So I did. And I got a bfp mid Feb

I rang EPAU the day I got my bfp, told them I'd had recurrent miscarriages and was booked in for a scan at 6 weeks, and told I'd be seen by a dr. I started taking low dose aspirin as I'd read that could help. Went for my scan and saw a heartbeat bean was 5+5 but had a nice heartbeat. A week later, I had my appointment at the recurrent miscarriage clinic, and was started on daily clexane injections.

I had scans at 6, 8, 10, 12, 16, 20, 28 and 32 weeks. DS2 was born at 40+6, perfectly healthy

I was told that my thrombofilia (not sure of exact spelling of that one) test showed slightly high levels, and because there is a family history of thrombosis (father had dvt, grandmother stroke and clot on lungs) I was put onto the clexane. I will need to take aspirin and clexane throughout any future pregnancies as well as a precaution.

It was a difficult pregnancy, we worried constantly but the EPAU and the clinic were both amazing, very reassuring and supportive. It sounds awful, but the attitude of the hospital staff completely changed once I was classed as high risk.

Anyway, I have waffled on a bit, but hopefully my post will help you a little.

System

Sorry for all of your losses, everyone,I just thought that I would pop a quick message of support for other recurrent miscarriage ladies.
I have also had recurrent miscarriages (3 + 1), and was referred for tests etc, I found it a very stressful time, and despite being a midwife myself at the time, I had some very difficult times.
Both our tests came back normal and we were told that we were just unlucky.
However, on my next pregnancy I had very early scans, weekly antenatal visits plus weekly scans and HCG injections for the first three months.
Happily I went on to have a healthy baby boy, then became pregnant again vey quickly (exclusive breast feeding is NOT an adequate contraceptive, I had the early and weekly scans but no injections and had another healthy baby (girl)15 months after the first one!
I had another early miscarriage and very sadly, two still born babies after that, but did manage to go on to have two more healthy babies.
I'm sharing this to let you know, that even after the most traumatic and painful pregnancy experiences, there is always hope for the future.
I hope this helps someone,
Linda x

lilymay1

Just incase this is of any help to anyone in the S. Yorkshire area, Jessops Hospital in Sheffield have an incredible consultant whom I would recommend to anyone. His name is Prof T.C Li and he specialises in recurrant m/c. He does treat other problems people have, but from my own experience he really is fantastic and the reason I now have DS.

I'm pretty sure he does private work too. I was very very lucky to be given him on the NHS as his waiting lists are years long.

Anyway, Just want to wish all you ladies all the best and i really really hope it happens for you soon xx

dizziblonde

I got "lucky" in that I got picked up into the system after two losses - since they seemed to occur at similar points in time I was told I'd be scanned from early on with any subsequent pregnancy - not to expect it to be successful but that hopefully the scans would reveal more of what was going wrong.

However Madam Contrary refused to give them permission to see anything going wrong and just high dose folic acid on prescription, and weekly first tri reassurance scans were enough to tip the balance in our favour in the end (the consultant said she'd seen that happen a few times) - granted, she did decide to put in an appearance prematurely but you can't have it all. Apparently sometimes just the reassurance of knowing your "in" the system and being monitored can make the difference.

skintchick

Well, I had my appointment at St Mary's RMC today. The letter had said to expect it to take 3-4 hours but we were there 90 minutes.

I had had to fill in a massive questionnaire beforehand to take along - I ended up having to scour old threads on here to piece together my miscarriage history! And we had to ask awkward questions of our families to get a family history too.

IT wasn't like I expected - it's a gynae clinic too so lots of people there and it felt a bit impersonal, but I saw the consultant who looked at my history and was very interested in the scan pic of my second missed miscarriage - he commented on how well formed the baby was and so he didn;t think it was chromosomal.

I then gave a LOT of blood which is being tested for blood clotting disorders. They aren;t doing chromosomal testing as apparently the guidelines have changed and the NHs doesn't do it because there is no treatment for it except IVF.

I had a scan, one of the transvaginal ones, and all was fine except that I have a small (1cm by 1.5cm) fibroid which is bulging into the uterus.

The consultant was quite excited about that and said that was most likely causing the miscarriages, so I am waiting for a date to have it removed. Should be 6-8 weeks.

In 5 weeks I go back for more blood tests and 5 weeks after that I go back for all my results.

So I think we have a problem/s and some treatment! Which is great news.

How is everyone else getting on?

cleofish

hi skintchick,

glad to hear that you had your appointment, hopefully once you have had treatment everything will work out for you.

i havent been on for a while, been taking a back seat and concentrating on other things but it has been in the back of my head about my referral. i phoned a couple of weeks ago to chase up and they told me it had been marked as urgent but they still had no date, but to call back by the middle of august if i still hadnt heared, so i might call next week again to check up.

can i ask, you said they dont do the chromosone check, but do they test the inital blood to see if it might be chromosone at all? ( basically how do they know if you need ivf if it is a chromosone problem?) i only ask as ive i had one molar and i know this can be problems with chromosones and i was hoping that i would be tested for this when i saw the fertility doctor and it could be ruled out, if they dont do the chromosone testing can they pick up any sort of intital problem to indicate it might be a problem that way? if you get what i mean?

i didnt realise it would be like a gyna clinic though as you have said i thought it would be more fertility driven, but i suppose getting the bloods and the scan done is a start, did you have the scan the same day? and did you get a pack through before your appointment to explain what would happen?

how did you feel after it all? im dreading going in case a problem that cant be sorted is found but i also want to go as for the moment we are exisiting in a limbo state when it comes to ttc, back to using protection again, but im still taking prenatal vitamins and folic acid to help to ttc, its mad :rotfl: